Choosing courage and connection after the trauma of NMOSD
This disease has a way of turning you into a recluse if you’re not careful
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If I take a minute to pause, I find myself in disbelief when I think about everything I’ve endured with neuromyelitis optica spectrum disorder (NMOSD). It’s as if all those difficult moments are pieced together as flashbacks that make up a terrifying mind movie, one I never auditioned for, never agreed to star in, and certainly never wanted to watch on repeat. Yet here I am, living with scenes that still flicker in my mind when I least expect them.
Some of the flashbacks are sharp and vivid, like losing vision in one eye, multiple times. There’s a particular kind of fear that comes with watching the world fade on one side, knowing it’s not a trick of the light or a smudge on your glasses. It’s your optic nerve under attack.
I did my best to stay calm during those moments, but inside, every ounce of me was screaming. When my vision finally did return, the memory of losing it didn’t leave. That mind movie has been quietly sitting in the background, waiting for its cue to return.
Traumatic flashbacks
Then there was the plasmapheresis. If you’ve never had tubing sticking out of your chest for weeks, consider yourself lucky. It’s not glamorous. It’s not brave. It’s uncomfortable, awkward, and, at times, painful. The removal process alone could be a horror scene. The nurses assured me it would be quick and painless, but it was neither. I remember lying there, trying to breathe through it, reminding myself that this was the price of survival.
And of course, the hospital stays. The endless fluorescent lighting, the beeping machines, the parade of specialists. But nothing makes you feel like a patient quite like the MRI machine. There’s something about being slid into that narrow tube, hearing the mechanical clanging, and knowing you must stay perfectly still while your body is being examined for damage. It’s clinical, cold, and strangely intimate. You’re alone with your thoughts, your fears, and the hope that the results won’t bring more bad news.
It would be fair to define these flashbacks as traumatic. They are not small inconveniences or quirky medical anecdotes. They are moments that changed me — physically, emotionally, spiritually. And like any trauma, they don’t simply disappear because the crisis has passed. They linger and echo.
Sometimes when I’m out for dinner, I look around at the other tables with people laughing, chatting, sipping wine, and I wonder if any of them have endured anything close to the nightmares I’ve lived through. I wonder if any of them are pretending, like I am, to keep it together and maintain some semblance of normalcy. It’s a strange feeling, being in a room full of people and still feeling like you’re carrying something invisible and heavy.
NMOSD has a way of turning you into a recluse if you’re not careful. After enough hospitalizations, unpredictable symptoms, and days where your body betrays you, staying home starts to feel safer. At home, I can control what NMOSD tries to put me through. The outside world is loud, demanding, and full of variables I can’t always manage. Trauma whispers that isolation is easier. And sometimes, it is.
Outlasting the trauma
But easier isn’t the same as better.
Overcoming the trauma of NMOSD and the desire to retreat from the world takes intention. It also takes patience because my life looks different from what I once imagined. It has meant slowly reentering spaces that once felt overwhelming, and letting people in, even when vulnerability feels risky. It has meant acknowledging the flashbacks without letting them dictate my future.
Healing doesn’t mean forgetting. It means learning to live alongside the memories without letting them consume me. I have been celebrating the days when I feel strong and trying to be gentle with myself on the days when I don’t. Surviving NMOSD has given me resilience most people will never understand.
When I look back at my NMOSD mind movie, I don’t just see trauma, I see endurance. Because if I can survive all of that, I can also build a life that feels meaningful, joyful, and connected. I can choose moments of courage over moments of fear. I can step out into the world, even if I do it slowly. And I can remind myself, every day, that NMOSD may shape my story, but it does not get to write the ending.
I do.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
Deborah Russo
Hope you’re doing well 💖 I too have neuromyelitis optica. It’s a devastating illness.